A Whole Life that is Beautifully Ordinary

A whole life that is beautifully ordinary:

This is language we are beginning to use more and more at FACT Oregon, so I thought I would share my thoughts on why.

For far too long, families raising a son or daughter experiencing disability have been lulled into believing that their child was special, experienced special needs, and was entitled to a special life. That often resulted in “special” programs: educations provided in segregated classrooms, placement in institutions for adulthood, and limited connection to one’s community.

I will be frank: this is a falsehood. When we buy into this false belief, our children are compartmentalized and recognized as nothing but bundles of disability. They are taught to be grateful for the little slice of a whole life they are exposed to versus the opportunity to design, develop, and pursue what you and I take for granted every day: a whole life!

I share this with you today to honor a woman who did so much for Oregon parents raising a child experiencing disability. Karen Staley dreamed big dreams for her son Jimmy, and pursued a life that would be beautifully ordinary. She aspired for Jimmy, who experiences disability, to have what every parent wants for their child: health, housing, employment, and a strong sense of community and belonging. To this end, with unfaltering determination, Karen advocated for there to be services available to support individuals in their pursuit of a full life in community.

The result was the Staley Agreement (2000) which secured the availability of services that supported integrated lives in community without languishing on never-ending wait list. Fairview Training Center, Oregon’s institution for individuals experiencing developmental disability, closed for good the same year that the Staley agreement was reached. You and I owe Karen and other tenacious parent leaders like her a debt of gratitude, for it was their desire to dream big dreams for their children that changed the lives of our children experiencing disability.

Karen passed away in 2013 having lived a life that was beautifully ordinary, doing what I understand she enjoyed immensely. Today I learned of her son Jimmy’s passing, and while my heart is heavy, I write this celebrating that he too, passed away have lived a life that was everything his family hoped for. He owned a home of his own, enjoyed working in community, and was embraced by many in his community. Jimmy’s life shaped the dreams I have for my son Todd. All told, Karen’s life demonstrated like nothing else that we must be the change we want to see in the world.